Published on Wednesday, 06 April 2011 13:29 | Written by Christie Pool

“It was a death sentence.It was terminal. Inoperable.”

–Ellen Holty of her child’s illness

Ellen Holty has gone through the unthinkable. She buried her three-year-old son.

Holty told her story last week at the county senior center as part of the ongoing series taking an in-depth look at end-of-life decisions organized through Affinis Hospice.

A decade ago, Holty, now a Big Canoe resident, had three children––the youngest just 18 months––when her middle child, a son named Pablo, began falling often. So often, she said, that he had what seemed like a permanent welt on his forehead. Following a series of doctors’ visits, her son was diagnosed with a 5-centimeter tumor on his brain stem.

“It was a death sentence. It was terminal. Inoperable,” Holty told the group of 20 attending the series last Wednesday at the senior center on Stegall Drive.

Doctors told her Pablo had six months to live if they opted for radiation treatments, three months without them. With treatment, however, the family would be forced to relocate to a different city, and Pablo would spend many of his remaining days in a hospital.

“My attitude was basically that treatment would have prolonged his dying,” Holty said. “I wanted to bring him home. The doctor said he didn’t blame me.

“I just wanted him home. We got an amazing hospice nurse. She met with us and identified what we wanted this experience to be. I wanted to make it as beautiful, as natural and as painless as possible. We basically never looked back. We had a beautiful time with our son. He was happy.”

Fortunately for Holty and her family, she had been through the volunteer training program at Zen Hospice in San Francisco following her father’s serious illness that left him with half a lung removed.

Holty has also been a volunteer at Georgia Mountains Hospice here in Pickens County.

“He was in ICU in Atlanta in a very sterile room. My mom, brother and I were there, but none of us knew what to do. My mom was just bereft. She was crying a lot. We left one night, and we literally didn’t know if we’d ever see my dad again.

“I couldn’t stand that feeling. I said there has to be a better way. I didn’t want my family to go through these transitions alone––in just this sterile hospital room. The next day (my dad) was fine. That was in 1999. He’s still with us. That inspired me to find another way.”

Terms: Living With Dying, being shown in parts at the senior center on Wednesday mornings at 9 o’clock, was conceived based on a meditative practice.

“Meditation is basically just awareness,” Holty said. “I don’t see it as any sort of particular religion. While there, we meditated together as a group.”

Part of the training, Holty said, was sitting around in a circle after meditating together and looking at photographs of residents who had recently died. “The picture showed them, and you could see them actively dying––but they were also pretty happy at the same time.”

Holty said they passed the photos around, getting a sense that there was nothing you could do to save them.

“You get a sense that there’s not enough room in your heart for all this dying. That worked on me very strongly––this sense of the constancy of death and dying all around us all the time,” she said.

As part of their training, volunteers were asked to define several roles they’ve had in this life––mother, sister, caregiver, professional––all the different ways to identify yourself.

“We wrote it on Post-It notes, and Frank walked around and said he was going to take these from us. From some people he would take one, then walk to someone else and take two or three, or from another person, he would take all of them.”

This part of the training, she said, was a wonderful way to understand what death and dying can do to a person. It can take away the sense of who you are.

“Not being able to fix something and just being present with another person. That’s what it taught us. The loss of your identity, the things that you are, that you really care about. That’s what dying can do to you.”

When her son became ill, she and her family struggled with how to explain dying to him.

“What do you say to a kid who’s three and a half? We told him stories about dying, stories about shooting in a rocket into the sun––those ideas of going to the light. It’s a mystery, and how do you articulate that?”

Holty found a German book called Bear’s Last Journey about an old bear that says goodbye to all the forest animals when he knows he soon will die. The bear gives his friends all the things he played with when he was young.

Holty said the hospice nurse who helped them through this time was so wonderful.

“Our hospice nurse was an incredible person who came every few days,” Holty said. “She kept his meds at the right levels, she was constantly tweaking them.”

Holty said she was so thankful they decided to bring Pablo home.

“At the hospital, we were in the pediatric oncology ward, and there were so many kids there by themselves with TVs on. There was no way I was going to leave him there. I feel quite confident we did the right thing.”

Friends and community members were wonderful, Holty said, doing things like taking their recycling out and bringing food.

“I want to emphasize that people be open to others and what people can do for you during this time. I think so many people’s tendency is to retreat. I was floated through this time by what people shared with me. Just being present with another person.

“I honestly feel that we can take on another person’s pain by being with them. It doesn’t hurt the same way, but that is what compassion is all about. You can actually lighten someone’s grief and suffering. I know because I felt that.”

When Pablo developed pneumonia, Holty said they knew he wouldn’t last much longer. All he ate in his final days was ice cream. But after a while he couldn’t even swallow that.

“That was awful,” she said. “We knew at that point it would be fast. He was very peaceful for the most part.”

Holty went to sleep one night, exhausted from her diligent stay at his bedside for so long, waking up at 5 a.m.

“He was still breathing, but it was really labored. You could really hear it. I guess it was the death rattle. It wasn’t a struggle, but he was working (to breathe),” she said.

“Within a few minutes of me waking up, he stopped breathing all of a sudden. After two weeks of no longer speaking he said, ‘Aahh’, ‘Aahh’. His hand kind of curled toward his face, and he was gone. It was incredibly peaceful, and beautiful. And I was so grateful he woke me up to be with him. It was a huge gift to be with him.”

Since Pablo’s death, Holty has scoured the Internet, finding only one child out of 300 annually who has survived this type of tumor.

“The survivor concept is what keeps us in hospitals. We think, ‘What if my kid could make it?’ But what if he doesn’t? He hated it, hated being there. He didn’t want to be in the hospital. It’s tough to take the leap and say yes it’s time for hospice. But, my God, I’m glad I did. It’s beautiful.”

The series at the senior center will continue for two more weeks, concluding on April 13th. The public is welcome to the free sessions beginning at 9 a.m.